Caring for Children with Neurodevelopmental Disabilities and Their Families : An Innovative Approach to Interdisciplinary Practice

by Vargas, Claudia Maria; Prelock, Patricia Ann; DiVenere, Nancy; Beatson, Jean

• ISBN13: 9780805844764
• ISBN10: 0805844767
• eBook ISBN(s): 9781135626587
• Format: Hardcover
• Copyright: 2004-07-01
• Publisher: Lawrence Erlbau
• More Book Details

Summary

Children with neurodevelopmental disabilities such as mental retardation or autism present multiple challenges to their families, health care providers, and teachers. Professionals consulted by desperate parents often see the problems from their own angle only and diagnosis and intervention efforts wind up fragmented and ineffective. This book presents a model multidisciplinary approach to care--family-centered and collaborative--that has proven effective in practice. A pillar of the approach is recognition of the importance of performing culturally competent assessment and adjusting service delivery so that is responsive to cultural differences. Detailed case stories illuminate the ways in which the approach can help children with different backgrounds and different disabilities. Most chapters include study questions, lists of resources, and glossaries to facilitate easy comprehension by professionals with different backgrounds--in special education, communication sciences, and disorders, clinical and counseling psychology, neuropsychology and psychiatry, social work, pediatrics--and program administrators as well as students, trainees and educated parents.Caring for Children With Neurodevelopmental Disabilities and Their Familiesconstitutes a crucial new resource for all those professionally and personally concerned with these children.

Table of Contents

Preface	xi
About the Contributors	xv
List of Case Stories and Disorders	xix
1 A Different Kind of Challenge	1	(34)
Patricia A. Prelock and Claudia Maria Vargas
Models of Practice for Neurodevelopmental Disabilities, New and Old	3	(7)
Training a Different Cadre of Health Professionals: Essential Elements at Work	10	(10)
The Practice of the Five Pillars in Various Contexts	20	(1)
Initiating a journey of the Model in Practice	21	(14)
2 Family-Centered Care and the Family's Perspective: Traumatic Brain Injury, Cancer, and Co-Morbid Learning Challenges	35	(34)
Jo Yoder and Nancy DiVenere
Karla's Story	35	(3)
A Family-Centered Care Philosophy	38	(6)
Entering the Maze: Dealing With Complexity	44	(8)
Working Through the Maze: Health, Education, and Community	52	(5)
Lessons Learned and Implications for Practice	57	(12)
3 Cultural Competence in Differential Diagnosis: Posttraumatic Stress Disorder and Reactive Attachment Disorder	69	(45)
Claudia Maria Vargas and Jean Beatson
Natasha's Story	69	(5)
Cross-Cultural Concepts of Health and Wellness and Health Needs	74	(10)
Consideration of Cultural, Linguistic, and Ancillary Factors That May Lead to Misdiagnosis	84	(8)
Cultural Competence Concerns Specific to Neurodevelopmental Disabilities	92	(4)
Cultural Competence in Serving Children With Disabilities and Their Families	96	(18)
4 Neonatal Intensive Care Unit Follow-Up Clinic: Interdisciplinary Developmental Assessment for At-Risk Infants and Their Families	114	(33)
Deborah A. O'Rourke, Stephen H. Contompasis, and Malai Holland
Kylie and Her Family	115	(1)
Dimir and His Family	116	(1)
Edward and His Family	117	(1)
High-Risk Infants: Specialized Care and Outcomes	118	(2)
Developmental Follow-Up for At-Risk Infants	120	(5)
The Neonatal Intensive Care Unit Follow-Up Clinic	125	(10)
NICU Follow-Up Clinic Visit for Edward and His Family	135	(1)
Outcomes of Neonatal Intensive Care Unit Follow-Up Clinic	136	(11)
5 Community-Based, Interdisciplinary Assessment: Considering the Context for a Child With Spina Bifida	147	(38)
Deborah A. O'Rourke and Ruth Dennis
David's Story: Spina Bifida	147	(3)
Rationale for an Interdisciplinary, Community-Based Assessment	150	(2)
Process for Interdisciplinary, Community-Based Assessment	152	(24)
Outcomes of the Interdisciplinary Assessment	176	(9)
6 Care Coordination in Challenging Contexts: Attention Deficit, Language Learning Disabilities, and Hearing Impairment	185	(28)
Martha P. Dewees, Jean E. Beatson, and Priscilla Douglas
Carolina's Story: Attention Deficit and Language Learning Disability	186	(1)
Care Coordination: What Is It and How Does It Work?	187	(2)
Care Coordination for Carolina: An In-Depth Look at the Issues	189	(1)
Family-Centered Care	189	(10)
Lessons Learned	199	(14)
7 On the Cutting Edge of Ethical Dilemmas: Reconciling an Adolescent's Transition to Adulthood	213	(32)
Stephen H. Contompasis and Sara Burchard
Jacques's Story	213	(4)
Transition Planning for a Complex Family and Situation	217	(1)
Developmental Services, the Developmental Disabilities Assistance and Bill of Rights Act of 2000, and the Olmstead Decision	218	(3)
Independent Living and Guardianship Issues for the Young Adult in Transition	221	(3)
Natural Supports and Rural Issues for Young Adults in Transition	224	(2)
The Young Adult's Voice Through Facilitated Communication	226	(2)
The Role of Interdisciplinary Teams in Assessment and Transition Planning	228	(3)
Using Planning Tools for Young Adults in Transition	231	(14)
8 Parent to Parent Practicum to Learn About the Family Perspective: Down Syndrome and Celiac Disease	245	(30)
Jo Yoder and Sara Burchard
Nicole's Story	245	(2)
The Practicum Experience: From a "Snapshot" to the "Album"	247	(1)
Family Practicum: The Process	248	(4)
Unique Insights: Trainees' "Aha!" Moments	252	(5)
Trainees Observe Challenging Issues	257	(5)
Trainees Learn About Family Strengths	262	(1)
Lessons Learned and Implications for Practice	263	(12)
9 The Role of Partnerships in Program Development for Adolescents With Autism Spectrum Disorders	275	(28)
Patricia A. Prelock and Claudia Maria Vargas
Sam's Story: Autism, Adolescence, and Transition	275	(2)
Forming Partnerships to Meet the Needs of Children With Autism Spectrum Disorders	277	(2)
The Challenges of Differential Diagnosis	279	(10)
Benefits and Challenges of Partnerships in Program Development	289	(3)
Challenges in Safety, Transition, and Health Care for Children and Youth With Autism Spectrum Disorders	292	(11)
10 Building Capacity in Law, Policy, and Leadership: Public Administration in Support of Families and Clinicians	303	(32)
Phillip J. Cooper and Ruth Dennis
Allison's Story	303	(3)
Leadership: Integrating Public Policy, Public Law, and Management Into Clinical Practice	306	(21)
The Long-Term Challenge: What Have We Learned About What We Need to Build on for the Future?	327	(8)
11 The Pillars, the Process, and the People: An Innovative Approach to Training Health Professionals in Interdisciplinary Practice	335	(22)
Claudia Maria Vargas, Patricia A. Prelock, and Phillip J. Cooper
Bringing It All Together: Interdisciplinary Practice From Theory to Action	336	(10)
The Pillars: Improving the Quality of Life of Families and Children With Special Health Needs	346	(5)
The Process: Proactive, Community-Based Care From Infancy to Young Adulthood	351	(1)
The People: Interdisciplinary Practice at Work	351	(1)
Looking Forward: Nagging Challenges	352	(5)
Author Index	357	(6)
Subject Index	363